Developmentally, Lijy is around the level of an 18 month old baby. Whilst he loves life, particularly running around out in nature and bouncing on his trampoline, he becomes frustrated and upset because he cannot effectively communicate with people. His frustration gets to the point of him physically harming himself; biting his hand and bashing his head on the ground and when we try o calm him, we can be injured during the process. He has recently starting lashing out more physically as he is progressing in his cognition, understanding what he actually wants, but unable to get the request across. He is constantly at high risk because he has no sense of danger (in fact he is drawn to busy roads and water!) and he has extremely limited understanding of warnings or even basic instructions such as "Sit down, please" or "Wait, please".
Lijy cannot tell us when he is feeling unwell, if he is hurt, what he would like to eat, if he is thirsty. He has a lot of sensory issues - sometimes things may be all too bright, loud or crowded for him. Or other times he may be in need of more sensory input - sometimes he needs a massage to help settle his system or he may need to go for a big long run or hide under the doona with glow in the dark toys. There are numerous things that can help Lijy feel more comfortable in this overwhelming world and he has such unlimited potential, but until he has a way of communicating with us and vice versa - he is frozen in a place of frustration, fear, pain and confusion.
Lijy's school and therapists have worked tirelessly to try to find the way 'in' to Lijy's world. He could not learn any sign language, Ipads do not work as he just thinks they are a game or a tool to watch videos on. He has found ways to communicate at times, using hand over hand guiding, occasionally using a picture exchange program, but none of this really seemed to stick or relieve his frustration.
BUT, last year the teachers trialled Lijy with a speech generating device and his response was overwhelmingly positive! This device is called the Accent 800, using a program called LAMP (Language Acquisition through Motor Planning) and it was clearly Lijy's favourite communication method. When he heard the device speak to him from across the room, he turned with a smile on his face and ran over to begin working with the teacher to learn how to use it. That month Lijy had more interaction with the teachers than ever before. He independently used the device to request favoured food items and toys, to go outside and to interact with the teacher during a fun game. The excitement his therapy team and family felt was huge. We have been on waiting lists with various charities for funding for this device since then but we are being told it is unlikely that funding will come through anytime soon. We are being palmed off from one place to another.
This time in Lijy's development and learning is crucial, early intervention or education(under the age of 7) has been proven to be the most beneficial for autistic children. As each day passes I can see him becoming more and more frustrated, which means he retreats more and more into a place where we cannot reach him.
For more reasons than I could type here - having this device sooner rather than later will change our lives so much for the better! There will be a lot of work that needs to continually be done with Lijy, so he may actually learn how to use the device to the best of his abilities. Therapists and other workers will be needed and costs obviously involved in that but right now, the priority is to get the hardware and program! The rest will come.
It is a basic human right to have access to communication. This darling boy has bravely battled far too long without it. If you can help us achieve this dream of having his own speech generating device before another year passes by, we would be beyond grateful. We would be ecstatic. Thank you kindly.
Kristy and Lijy
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